Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

My photo
My Maddening Maze began suddenly, when I was just 47, with a plethora of autoimmune diseases. The life I knew changed forever due to chronic debilitating fatigue and pain. Faced with challenges beyond my understanding I began a never ending search for answers. I was later diagnosed in 2010 with a Rare Disease, Cryoglobulinemia Vasculitis. This disease causes my blood to gel in what appears to be temperatures lower than 70 degrees. When this phenomenon happens it can be life threatening causing organ damage, stroke, eye and vision loss along with a host of other complications. Both my kidneys and heart have been attacked by this uninvited guest and each day brings new challenges both physically and mentally. I live to find answers for myself and others that are afflicted with this rare disease and to find joy in living, whatever the cost. My passion and purpose is sharing the voice of the patient lost in the Maze and offering the face of Wellness in spite of it all.

Monday, February 13, 2012


I'm excited to share the good news.

This morning I received a call from my oncologist telling me that my blood test for Cryoglobulinemia Vasculitis came back NEGATIVE.  This means that the LAB TEST was unable to detect any Cryoglobulins in my blood. It does not mean there aren't any. It does mean they have reduced enough to give me a negative reading. And that is great news.  I actually have had 3 incredibly awesome weeks and I feel like my body is getting stronger and healthier. I still don't know what tomorrow will bring with all the complications but for today I finally  have made progress after living with constant fear for the last 3 years and living like I was dying.

Never ever did I feel I would think about tomorrow.
Never did I think I would see normalcy of any kind.
Never did I think I would see joy in my husbands eyes.
Never did I think my body could recover.

So today I offer you a RAY OF HOPE for wherever you are on your journey

Never ever give up.

No comments:

Post a Comment

Please contact me at if you would like to know more about Cryoglobulinemia Vasculitis.